On Monday Amaya started complaining of hip pain. It was hard to figure out why it was hurting, what was causing it, and what would help it. I had her do some of the hip stretches that Melissa had taught us before. Amaya said it ached when she did them and wasn't sure if the stretching helped. Tuesday nights he woke up crying in pain. This hasn't happened in awhile. I hate to see Amaya in such pain. I massaged her foot and hip then she fell asleep for the rest of the night. Wednesday she woke up with a stiff and painful leg. She said it hurt to walk, but she still got ready and tried going to school. She asked to take her walker to help her walk (its been stored in a closet for weeks now). But after a tear filled drive Josh brought her back home. She wanted to go to school and "try to tough it out" but we knew that wasn't the best for her or her classmates. When she came back home she asked for some tylenol and a hot pad to help with the pain. She hasn't needed pain medication for months and has a high tolerance for pain so when she asked for it I knew she wasn't feeling well. She used the hot pad throughout the day and took Tylenol once more during the day and again before bed. Last night she slept okay, but again woke up with a lot of pain. The pain worries me so I was so happy that we would be seeing Melissa today so she could give us some input on the pain.
This morning we had our consultation with the plastic surgeon. As we were walking in Lidie told Amaya that she didn't want her to have to go in or "have to get cut." I told her that Amaya would be fine and wasn't going to be cut or hurt. She's very protective of Amaya. Its sweet. When we saw the nurse she said Amaya now weighs fifty two pounds (with shoes), which is about five pounds more than when she had her fixator removed. Its nice to see she's gained some weight in three months. She had lost about ten pounds when she had the fixator on. The surgeon was very nice and asked a lot of questions. He had read through Dr. Nelson's reports about the surgeries then asked why we were there. I told him the wound doctor had referred us for some fat atrophy in the heel. He examined her heel and said he did notice a dent. in the heel. He said since she wasn't as sensitive (it didn't bother her or hurt her when he touched it) as she was when she first saw the wound doctor and it was showing signs of healing that we should hold off on surgery. He said surgery opens her up to possible infection and complications. He said that its pretty rare to have a wound that didn't burst, or open then heal on its own. He said it was pretty rare. He said he did see some fat atrophy and the bad thing is that whatever fat is gone is gone for good. He said the fat cells that are there can grow as she gains weight, but they might not fill in the entire space. He said a fat transfer could be an option for her, but we'd have to find a place to get the fat from (she's really skinny). He said that when they do that half of what is put in stays. He said since there are some signs of healing lets hold off on that. He said that as she gets older and gains some weight if its still bothersome we can come in and see about doing something then. He said if its there when she's older and doesn't bother her then we can leave it alone. So all in all I was pleased with the appointment. But like Josh said, he wishes it didn't happen in the first place and that she didn't have to deal with this long term.
After that we had physical therapy. Its our first session this week since we're only coming twice a week now (woo hoo!). We had rescheduled our appointment from Monday, due to snow, to today. I was a bit nervous about how Amaya would do at therapy today with her hip pain and since she hasn't come in five days. Although we're still doing our nightly physical therapy homework.
I mentioned the hip pain to Melissa and she started checking Amaya's hip and trying different stretches to try to find out what was causing it.
Here's Lidie sporting her new shinny pants.
Melissa said it looked like possibly some bursitis in the hip (one more thing for me to google). She said its when the bursa, a small bubble type thing that sits between the tendons and bone gets inflamed. She taught us this stretch and is having us to do it in the morning and before bedtime. She said Amaya isn't fully testing positive for the bursitis, but she suggested the stretch and taping the hip to see if that would help.
Then Amaya did some leg lifts with the green band then while wearing a 1.5 lb. ankle weight. Its really nice seeing her be able to lift a weight. For awhile she didn't have the strength to do that.
Then as she jumped on the trampoline Amaya complained of hip pain. Melissa had her come off and had her walk.
Then she had her try to stand on her left leg. Amaya said that hurt as well. Then she asked her to loft her leg out sideways. Amaya lifted it up about a foot then said it hurt too much. This hip pain is so weird. Then Melissa had her walk around the adult gym while holding 2 lb. weighs in each hand. Lidie and I stayed back in the gym while Lidie played.
Then Amaya walked on the balance beam and bent down to pick up bowling pins she did that five time and did really well with it. After that we did knee bends. I wasn't sure who that would go. Amaya started at 118 degrees. A degree less than last time. She told Melissa she wanted to make 133 her goal for the day. That was pretty ambitious considering her pain and that she hasn't come to therapy in five days, but I don't dare doubt her or nay say. I cheered her on and challenged her to meet her goal. She jumped to 122, then 126 and at this point was in pain and thought of giving up. I reminded her that her friend Caelan is also doing therapy and struggling with knee bends. I told her that he was proud of her for doing so well and that she owed it to him to do her best whatever that would be. She gave another big push and got 130, and just as I thought that was as far as she could go she went a bit further and got 133 degrees! Two degrees higher than last time! Caelan you helped Amaya today! Thanks for reading our blog and know that we're proud of you! Your hard work inspired Amaya to not give up and to try harder. Keep Caelan in your thoughts and prayers he has three more weeks before his fixators come off.
Before we left Melissa taped Amaya's hip. She's hoping it'll help with the pain. About an hour later Amaya said the hip felt better and her complaining has decreased. She also didn't ask for pain medication or a hot pad the rest of the day so maybe its working.
After that we had an appointment at the orthotist to pick up the boot her wound doctor ordered (way back in December). This is our third attempt at picking up the boot. Its such a frustrating mess! We went in and they tried to give us the gray boot below. Its "great for fractures." I almost screamed. Amaya doesn't have a fracture, just a bedsore. If she gets a fracture I'll make sure to ask for that one. Ay yay yay. Seriously, how hard is it to get the boot the doctor asked for. The guy told me they don't make the boot the doctor ordered, and that they only make one with the heel cut out for nighttime use not for walking. I showed them the picture of the boot (the black one below) that the wound doctor prescribed. Then they tried to tell me they only come in adult sizes. But the picture clearly says, "pediatric" on there. They left the room a few times to try to find one in the back or in a catalog or calling some manufacturers. Again they tried to suggest that I keep the gray one. I denied it and explained that it wouldn't be doing anything for the heel, which is what we need. They said that you can pump air in this one and it would relieve pressure off the bottom and they could add inserts to the front bottom to help elevate the heel. I asked for the boot the doctor prescribed and didn't budge. Then they happened to find one like it, but in brown that can be shipped over night. Being a mama bear paid off (lets hope). We'll be returning tomorrow to get fitted and pick up the boot. They asked how close we live and I said about an hour away, then they apologized for making us come in so much. I hope this will be taken care of tomorrow because my patience has been exhausted.
See the difference in the heels of the two boots? Only this one allows her heel to be suspended and not have any weight on it and has a sole so she can walk on it.
No comments:
Post a Comment